Newbie — Reeve Connect
Reeve Connect will be shut down on October 31, 2021, while we reimagine and refresh our community forum. Thank you for making Reeve Connect a place where all people living with paralysis come to share their stories, tips, and engage in lively discussions. Stay connected with Reeve as we explore new community platforms and bring you an updated site that will be easier to navigate and accessible for all people living with paralysis. You can follow the Reeve Foundation on social media and sign up for our newsletter to receive the latest news on our initiatives and programs.

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tooalone Member Posts: 10
Photogenic Name Dropper First Comment
Hi everyone! I am so happy to have found you after years of going through this alone. I haven't found my symptoms any where, the neurologist after a year said " I don't know why it happened, but it could happen to your other leg too", rather cruel of her I think. I have had every test, EMG, catscan, MRI, dye shot into my spine, xrays, etc while I was in solid pain for a year. It, I believe was my sciatica down my left leg. I never had any pain in my back ever. There was no trauma, stroke, disease, etc. I literally was sleeping one night but woke up to a terrible pain in my ankle. It woke me up! In the days ahead my entire leg including butt was in terrible pain. I went to the ER. Nothing. I went to my doctor who sent me to a neurologist for an EMG. That took 3 months to just get that appt. while being in horrible pain every hour of every day and night. I went to PT, I had stims, I had stretches, I did everything and nothing stopped the pain. But I could still walk fine. I also saw a neurosurgeon who said after tests that there was nothing in my spine to operate on, it was fine. My regular doctor every once in awhile would ask me if I had foot drop. No, didn't even know what he was talking about......until many months later my foot started becoming "not my foot" any more. It got to the point I couldn't even move my toes, my ankle/foot was totally paralyzed. I was shocked and still in pain. I got a brace which helped some but it was awkward yet useful. After about a year, the pain started to subside in different parts of my leg and butt cheek. I am guessing that it was about 18 months before I had no pain, but was left with a paralyzed ankle and foot.
My life I knew, I no longer have. I can't walk safely except on an even flat surface. No more walks in the woods, no more walks with the dog, except on pavement, etc. Then came my toes......they started to work again, I got excited, I thought I would get all forward many more months and found that while sleeping or not standing on my foot, my toes would spring up in the air, only the pressure of standing or walking puts them back down. Now, I believe I have contracture.....when will this end? What the heck happened that night? What can be done? the very long hello everyone!!!


  • Monica.T
    Monica.T Member Posts: 105 ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    Hi tooalone , The unknows are scary, not having any answers surly does make you feel completely alone. Keep searching for answers, and as hard as it seems, keep pushing forward. Being here you will find compassionate people and emotional support, as well as a lot of very useful information for helping you get through daily life.

    I'm fairly new here myself, 20 months ago my son had a SCI, this community has helped us so much! Having others to talk to shows us that we are not facing the 'un-knowns' alone.

  • ambercollie
    ambercollie Moderator Posts: 191 Moderator
    100 Comments 25 Awesomes Second Anniversary 25 Likes
    @tooalone I'm glad you found this site and hope we can help in anyway possible. Your initial reason seems to still be a mystery. As much as you want to know what happened  and I would too! Consider letting that part go and keep focused using energy on what's happening now. Sounds like there has been many ups and downs. 2 things stuck out when reading your post. You said you no longer take walks with dog. Have you tried using some type of crutches or wheelchair just for walks to get you outside and still doing the things you love. My son is a quadriplegic, likes to take his service dog out. 
    Also they do have special foot boots you wear at night to prevent foot drop. 
    Dont give up! You sound like a very strong person. Again Thank You for sharing.
  • housecatfrosty
    housecatfrosty Member Posts: 8
    First Comment Photogenic
    how do i add sci and paralysed to my info now it says other
  • Barb
    Barb Member Posts: 1
    First Comment
    My story is a long one..cliff notes: Accident in the 1990s incomplete SCI, COPD, way too many broken bones they've healed I've had many surgeries sometimes legs work other times nope. While I'm unable to extend my legs it's very difficult to balance. I use a scooter, wheelchair, oxygen and medicine with chronic pain. Allergy meds are my best buddy and I want to travel and go places meet people spend quality time with family . Today recovering from the storm its monsoon season Winds blowing dust and rain. I'm into computer games for distraction and presently enrolled in Cardio-pulmonary Rehabilitation.  I have many other little issues that kick up off and on. I took a Reeves seminar on Secondary ilness and realized that I'm not going insane or being a hypochondriac my ilness is real. I'm handling and just want to get out more.
  • BrittanyFrank
    BrittanyFrank Moderator Posts: 65 Moderator
    Second Anniversary 10 Comments 5 Awesomes Name Dropper
    It's so therapeutic to share and not feel so alone. Although all of our circumstances are different, there's a lot that we can relate to as well. 
  • ambercollie
    ambercollie Moderator Posts: 191 Moderator
    100 Comments 25 Awesomes Second Anniversary 25 Likes
    @housecatfrosty what was your question?

    @Barb Thank You for sharing. Can I ask where you live, you talked about monsoon season (Hawaii) I'm glad you took that Reeve course on secondary issues and it helped
  • carol277
    carol277 Member Posts: 1
    First Comment
    Hello. Im Carol. I have spinal myelitis. My left side has no movement. My right side does. I cannot feel sensations like hot or pressure. A hair falling down my leg feels the same as water. The paralysis continues to my diaphragm. This happened nov 2017. I am grateful to find this powerful resource. I think i could improve my way of doing things if i could talk to people. Today i watched Garrison Redd’s you tube video on getting into and out of bathtub from my chair. It was so promising. Thank you

  • ambercollie
    ambercollie Moderator Posts: 191 Moderator
    100 Comments 25 Awesomes Second Anniversary 25 Likes
    @carol277 So glad you found this site and its helpful to you.